What is a Invisible illness, What does it look like and How can I support someone battling one?

Featured by Charlotte, posted in Blog posts

An invisible illness refers to a medical condition or disorder that doesn’t have obvious physical symptoms, making it difficult for others to see or understand the person’s health challenges just by looking at them. These conditions often require a deeper level of understanding and empathy because they aren’t readily apparent on the surface.

It’s like having surprise party in your own body, that nobody not even yourself got the invite too, so nobody even sees the chaos that’s going on but you’re stuck there with these surprise guests like fatigue and pain who bring all their mates with them like muscle spasms and headache… and they won’t leave; and all you can do is smile and pretend to the rest of the world that you’ve not got these nightmare guests staying with you that you have no idea how long will be staying for.

Imagine your body as a secret agent’s headquarters, but the agents are so undercover that even your best pals can’t spot them in action. These conditions, like Fibromyalgia, Depression, Lyme Disease, irritable bowel syndrome, Chronic Fatigue Syndrome, and Multiple Sclerosis, are often known as “invisible” because they don’t always come with the usual fanfare of cast arms or colorful band-aids, usually no one else can see the battle going on within their body. These illnesses are very real and cause a lot of suffering, these illnesses throw silent parties with symptoms like fatigue, pain, brain fog, and mood swings – all invisible to the naked eye.

So…. What does invisible illness look like?
They look like me and you.. it’s face is invisible, we are just ordinary people living with extraordinary struggles.
❤ We’re the ones who hide the tears and pain behind a fake smile.
🧡 We’re the ones who park in disabled parking spaces only to get Karen’s shouting ‘you don’t look sick, you’re faking it’.
💛 We’re the ones getting dirty looks every time we use a disabled toilet because we don’t have or aren’t using our mobility aids.
💚 We’re the ones having to prove to almost everyone we meet that we are in fact disabled and sick because some days we are high functioning, some days we don’t need our aids…it doesn’t mean we aren’t struggling or going to pay for it later.
💜 We’re the ones going undiagnosed for many years because ‘you don’t look sick and ‘young people don’t get sick’.
💙 We’re the ones too scared to ask for help for fear they’ll say the same.
Often we’re the ones fighting a hidden battle silently so not to be a burden or be seen like we are always complaining…

The face of invisible illness is hidden you can’t always tell that someone is battling with something…we don’t have to prove our illnesses to anyone.


⭐ So when I get the random strangers who say ‘But you don’t look sick’…
I’ve learnt to respond with ‘I’m a catfish… because some days I look well, other days you wouldn’t even recognize me’. ⭐

Because that’s the thing with invisible illnesses often our battles are hidden behind closed doors, on a bad day we don’t go out so you never see it and when we are struggling we smile pretend we are OK… but inside we are really struggling.
But just because you can’t see it, it doesn’t mean it’s not there!

What can you do to support someone living with an invisible illness?

Supporting someone with an invisible illness is about empathy and understanding. Here’s how:

  1. Listen and Learn: Listen to their experiences and educate yourself about their condition.
  2. Be Patient: Understand their symptoms can vary, so be flexible with plans.
  3. Offer Help: Ask how you can assist with daily tasks or appointments.
  4. Check-In: Regularly check in to show you care.
  5. Educate Others: Help raise awareness among your circle.
  6. Respect Boundaries: Respect their limits and decisions.
  7. Be Positive: Offer encouragement and celebrate their victories, no matter how small.
  8. Be a Distraction: Sometimes, they need a break from illness-related talk.
  9. Respect Privacy: Understand they may not always want to discuss their health.

Your support can make a big difference in their journey.

Navigating the CHC Labyrinth: Being an Employer and Chronically Ill Warrior

by Charlotte, posted in Blog posts

Imagine being in your twenties, full of dreams and aspirations, but also dealing with a chronic health condition that dictates much of your daily life. This is my reality, and it comes with a unique set of challenges. On top of managing my health, I’m also an employer, responsible for hiring and coordinating my carers through Continuing Healthcare (CHC). In this blog post, I’ll share the hurdles I’ve faced as an employer while chronically unwell, as well as the uphill battle to secure CHC funding, and the intimate challenges of privacy and cancellations.

Understanding CHC: The Elusive Lifeline

First, let’s demystify the enigma that is CHC. Continuing Healthcare is a package of care for those with complex, ongoing healthcare needs. It covers everything from nursing care to personal care and is fully funded by the National Health Service (NHS) in the UK. However, getting approved for CHC can be as challenging as finding the Holy Grail. Obtaining CHC is a battle of David vs. Goliath, and I’ve had my fair share of encounters with bureaucratic giants:

  • Advocacy: The first challenge is convincing the NHS that you qualify for CHC. It involves navigating a complex assessment process where your needs are scrutinized, and sometimes it feels like you’re on trial. Advocacy is crucial, and having a supportive medical team and family is invaluable.
  • Haggling for Hours: Once you secure CHC, the next battle is convincing them that you need more hours of care. Chronic illness doesn’t adhere to a strict schedule, and flexibility is vital. It’s a never-ending negotiation to make sure you get the care you need.
  • Carer Roulette: Finding and retaining carers who are both competent and compassionate can be a rollercoaster ride. It’s not just a matter of posting a job ad; it’s building a team you can trust with your health and privacy.

“Sometimes, the lines between boss and friend become about as clear as mud in a rainstorm”.

Privacy Predicaments: The Unwanted Houseguests

Privacy is a precious commodity, and it can become a luxury when you have carers constantly in your home:

  • Living Together: Having carers in your home means learning to coexist. They see you at your most vulnerable, and you, in turn, must get comfortable with your own vulnerability.
  • Boundary Building: Maintaining personal boundaries while inviting someone into your life is a challenge. You may find yourself at times sharing your life stories or discussing Netflix series when you’d rather have some personal time. Sometimes, the lines between boss and friend become about as clear as mud in a rainstorm, which has personally for myself been something that has become quite a challenge at times when you need them to be doing more that day and they just respond with ‘yeah in a bit’, having a carer who becomes a friend or is a friend certainly has its challenges but when your living room doubles as the office, the lines between work and play can become one big blur.
  • Security and Secrets: The knowledge that someone has access to your home and personal spaces can be unsettling. It requires a leap of faith to build trust, but the security of your belongings and privacy is paramount.

The Unseen Heroes: Unpaid Carers

Behind the scenes, there’s another unsung hero, my mom. When carers cancel, fall sick, or are unavailable, my mom steps in without hesitation. She’s an unpaid carer, often picking up the shortfall and making it possible for me to maintain some semblance of normalcy.

The CHC Journey: Frustrations and Triumphs

The journey of being an employer with CHC is not without its bumps and bruises. But with each challenge, there’s also an opportunity to triumph. It’s about resilience, advocacy, and celebrating the small victories. My hope is that the system evolves to better support those navigating the CHC labyrinth.  My aspiration is that by raising awareness and openly discussing the challenges and obstacles faced by individuals like myself with CHC, we can spark change in the system. It’s about shedding light on the strength and determination of those living with chronic illnesses and acknowledging the invaluable support of unpaid carers. Through this collective effort, we hope to inspire a shift towards a more inclusive and responsive healthcare system, one that empowers us to lead lives that transcend the limitations of our health conditions. Together, our voices have the power to drive the change we so desperately need.

Kettles/Hot Water dispensers

by Charlotte, posted in Disability Aids

Hot water is something all of us use in our homes but finding a product when you live with a disability to make getting hot water safer and easier can be a real challenge so I’ve broke it down into the products I have found most useful for those living with a disability.

First up is, The Uccello Kettle.

This kettle that’s been designed with those with disabilities in mind. This lightweight kettle allows those with hand impairments and strength issues to use a kettle safely once again.

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As someone living with a neurological condition, I was forever scolding myself when I became faint and dropped the kettle or when my hand weakness was playing up.
The Uccello kettle takes that worry away as this easy to pour kettle doesn’t even need to be lifted at all, meaning I’m able to now make myself a hot drink again… Yes lots of hot chocolates were had.
It’s really simple to use and very lightweight to pour. It’s so effortless I could pour it with just a finger…. and if I let go of the kettle, it will simply return back to the upright position meaning no more accidental spills and burning myself. This product I’d highly recommend to those with muscle weakness which restricts their ability to lift a standard kettle.

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Pros:

  • Lightweight, easy to pour
  • Unique with color options- Yes finally an aid that doesn’t look clinical.
  • Tilt to pour so no lifting needed
  • 1.5 L capacity

Cons:

  • Quiet boil- I found this kettle to not be so quiet after the first few uses. It’s certainly not the loudest kettle on the market but it certainly over time has become less ‘Quiet’ and more like a standard kettle.
  • Cost- Coming in at £52.50, it’s not really a budget friendly option.
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I feel like the Uccello Kettle product has really made a big difference and made using a kettle a lot safer for me. Saying that the Uccello is not the only kettle aid on the market.

Kettle Tippers are designed to allow you use continue using your own kettle at home and simply adds a easy pour element, this product is also budget friendly being the cheapest I’ve found on the market. It can be found at essentialaids.com for under £20.

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The next option on the market are Hot Water Dispensers, which are perfect for those that just simply want to fill a mug of hot water. These are user friendly and take away the need to pour hot water at all. This product is best for those are even tipping a kettle would be unsafe for. But may not be suitable for those that want to use a kettle for more than just a mug of hot water or who have multiple people using the needing hot water at one time, they also might be unsuitable for those that put hot water in their hot water bottles. This specific one by Breville comes in at £75.

Pros:

  • User friendly perfect for a quick mug of water
  • No need to pour or tip a kettle

Cons:

  • Can’t do more than one mug at a time
  • Not suitable for those that need hot water for hot water bottles
  • Price- Not budget friendly but maybe worth the investment.
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Finally we have Instant Hot Water Taps, this product is fantastic for space saving if you live in a kitchen with not a lot of surface space or if you simply don’t like the look of the other options on the market. The Instant Hot Water Tap, does just what it says providing hot water a simple turn of the handle. This product would be ideal for this who struggle to pour or lift things but may not be suitable for those that might struggle with cognition or are simply clumsy like myself who would definately put their hand under the instant hot water tap without thinking. This product from bower palma (victoria plumping) is the most expensive out of the options coming in at nearly £300.

Pros:

  • Instant hot water, not waiting around
  • No need to lift anything or pour anything
  • Good option for those with limited kitchen surface space
  • Looks nice and user friendly

Cons:

  • Difficult for those that struggle with tap handles
  • Risk of burns/ scolding
  • Most Expensive Product


I hope this has been helpful to show you there is more than just the standard kettle available on the market. Picking the right one for you comes down to budget and dependable on your disability. It might be helpful to speak with your occupational therapist and get their input on might be best for your individual needs.

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Let’s Talk Hoisting!

by Charlotte, posted in Blog posts

For those who aren’t aware what a hoist is, it’s a device those with limited mobility use to make transfers. This can be from your bed to your wheelchair or from a chair onto the loo or even into another room in the house. A hoist is what allows people to be able to get up and out of chairs and up and out of bed when they don’t have the strength or the energy to do it themselves.

Hoists are prescribed frequently for those with limited mobility on the NHS so if you have mobility issues, Ask your occupational therapist or doctor about a hoist. They can also be bought privately from mobility companies.

There’s lots of different types of hoists so I’ll talk you through the basics.

Mobile hoists– This type of hoist is usually a four wheeled portable device which need to be pushed by a care giver.

Mobile hoist

Pros

  • They don’t require a track being installed, which makes them a better option for those who temporally need a hoist, those who won’t be able to have a ceiling hoist put in their home due to their landlord or ceiling not being strong enough.
  • They are portable so very helpful for going travelling, as most fold down and can be transferred in a wheelchair accessible vehicle.

Cons

  • They can put a lot of strain on the care giver to be strong enough to push and pull the device around the room.
  • They don’t allow you to independently transfer as you’re reliant in the care giver to push the hoist.
  • They are heavy and need plenty of space to be stored, making them unsuitable if you have no storage space or have a small room.
  • They need enough space around or under the chair or bed you’re sat in to get the device close enough to you to be hoisted, making this type of hoist unsuitable if your bed is not raised from the floor on legs.

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Bath hoist

Bath hoists– This type of hoist helps someone transfer in and out of the bath. They are usually attached to the floor of the bathroom and allow a person to be transferred into the bathtub.

Pros

  • They can be operated by a care giver or even by the user themselves, so they may be able to independently transfer in and out of the bath tub themselves.

Cons

  • You do need a medium to large bathroom to be able to have this device installed as it’s fitted to the floor, so has the potential to get in the way if you have a small bathroom or use a wheelchair.

Ceiling track– are a device that works on a track these put less strain on the care giver and even can allow the user to transfer themselves without the need for a care giver to do much manual work. They go from side to side or back and forth. They can be install in one room or a track can be made to go into multiple rooms.

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Ceiling track hoist

Pros

  • There is little to no strain on the care giver with a ceiling track hoist as there is no pushing or pulling involved with this type of hoist. You simply press a button on the remote provided and it will lift the person up/down, forward/backwards or left to right.
  • The track can be installed in one room or it can go into multiple rooms, allowing you freedom and to be trasnferred pretty much anywhere around the house.
  • You may even be able to independently use a ceiling track hoist without the need of a care giver

Cons

  • Ceiling hoists are drilled into the ceiling so they may not be suitable for older buildings or people who’s landlords don’t want an adapted property.
  • They aren’t portable so you’ll be unable to take this type of hoist away on a break with you.

Wall to wall hoist– This type of hoist is very similar to ceiling hoists, however they are drilled into the walls instead of the ceiling making them a better option for those who’s landlord won’t allow for a ceiling track hoist or for those who live in a old building.

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Wall to wall hoist

Pros

  • It creates less strain on the care giver than a mobile hoist, as all the moving up/down and left to right is done using a remote control.
  • Similar to the ceiling track hoist, you may be able to independently transfer using this type of hoist.

Cons

  • You can’t go into multiple rooms using this type of hoist.
  • You have to decide where in the house you will need the hoist and where you will need to keep your bed or chair so the hoist can reach it. This may stop you from being able to move your furniture around in the room as you hoist will stay in one place and may not be able to reach you if you were to move your bed or chair to another part of the room.

Gantry hoists– is a four poster bed style hoist used similar to a ceiling or wall to wall hoist but without any holes needing to be drilled. They‘re also portable but do take time to set up.

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Gantry hoist

Pros

  • They are portable so can be taken away with you, however they are on the heavy side and do take time to set up.
  • They put less strain on the care giver than a mobile hoist.

Cons

They are portable so can be taken away with you but are rather heavy and do take time to set up unlike a mobile hoist.

  • They are heavy and once moved can take time to set back up.
  • They usually require you still to be pushed from left to right, as they usually only come with up and down functions. This means you may be unable to independently transfer.
  • They are rather large and unsightly, they may get in the way if you have a small room.
  • They don’t have all the functions a wall to wall or ceiling hoist has, such as the left and right functions and back and forwards. This may mean you’re still reliant on a care give.

Standing hoists– This type of hoist is for those with some mobility or who are able to weight bare to be transferred. They do often require the help of a care giver.

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Standing hoist

Pros

  • They help with raising you from a seated position to standing, which is perfect for those who struggle to get out of a chair and onto their feet.

Cons

  • They require the help of a care giver to push the device, putting some strain on the care giver.
  • you need to be able to weight bare and stand to use this hoist.
  • This type of hoist doesn’t allow you to independently transfer.
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Invacare Alber Twion M25 power add on ⭐⭐⭐

by Charlotte, posted in Wheelchair Reviews

A few months ago I had the chance to try the Alber Twion power assist wheels by invacare. This power assist can be fitted to most manual wheelchairs. To start it you simply turn the wheels on and start pushing on your hand rims. The more you push the hand rims the quicker you’ll go. They are the perfect power add on for those trying to save there shoulders and still are able to self propel but just need a little more help.
The great thing with the power assistance being in the wheels is that it means it doesn’t affect the length or turning radius of your wheelchair. The wheels weigh roughly 6kg each which makes them portable and lightweight enough to simply be picked up and put into a vehicle without the need of a ramp or hoist. It travels 6km an hour with the option of up to 10km.
It also has an app which can tell you battery status, distance travelled speed and calories burnt.
The blue drive function allows you to be able to control your wheelchair from your phone once you’ve transferred out of the chair so you can move the chair out of the room or bring it close to you.

Pros

● It has the option of Bluetooth so you literally can drive your wheelchair to you from your phone.
● Its lightweight enough to still be able to pick them up to load into a vehicle
●It doesn’t increase the turning radius

Cons
●It’s quite hard getting use to using the wheels they both work individually so that took a little getting use too at first.

● If you’re not a fan of standard wheels and much prefer loopwheels or spinergy wheels- they’re not an option with this power add on as the power add on is built only into standard wheels.

● Quite difficult to use if you have limited hand function

Conclusion

Coming in at £5325 these wheels aren’t the cheapest power add on device on the market however, we can’t ignore the amount of freedom and flexibility this product will gives so many manual wheelchair users. It’s the nice midline between a standard manual without a power assist and an electric wheelchair and allows you the freedom of being able to fit it into most standard vehicles without the need of a hoist or power add on.

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Lets talk about the ‘C’ Word- Coronavirus!

by Charlotte, posted in Blog posts

“We are the vulnerable and our lives matter too!“


My household is, like many, in isolation… I don’t only live with rare complex conditions and a respiratory condition but with an airway that keeps compromising each month that’s needed paramedic support. I also live with my parents who are both in the vulernable cateory themselves so the the coronavirus is having a huge impact on not only our lives but many peoples lives around us too… my sister was pulled out of school before the schools were forced to close, family members have had to stop going out and carers who come into my home, have had to give up there main jobs in order to isolate so not to bring coronavirus into our vulnerable household… this is a big ask when they will not have an income coming in from self isolating.

For people like myself who have low immune systems or complex health problems and respiratory conditions, many of us will already understand the importance of being high on hygiene, wearing gloves and wearing our n95/ n99 masks and having to try and stay safe as possible especially when out. This is just part of our everyday lives. Many of us have been isolated in our homes for a long time and will understand the importance of not getting something like a virus onboard.

When its flu or cold season or when a virus like this Corona virus comes along we ALWAYS have to be that extra cautious and careful…
I’ve heard many people online going ‘its just a virus… people are being over the top… flu kills more’. Ask yourself since when has the world responded like this to a virus before…. Never!

For many healthy people a virus or an everyday infection will make them poorly and they will recover without complications. However, for those with complex health problems, rare diseases or low immune system or respiratory diseases, these viruses or infections can be a matter of life and death… and if we by some miracle we make it through, we suffer huge deteriorations in our health and complications of our conditions that we might not recover from.

If that’s how bad the common cold and flu can be to some of us with these complex conditions.. Imagine what it will be like if we were to get something no one knows how to treat like coronavirus. Reminding yourself that coronavirus isn’t just your usual everyday flu or cold, this is a virus making even the healthy seriously unwell.

So please the next time you laugh and joke that “only the sick will die… oh well”… please remember this virus can affect anyone, any age. That is someone’s mum, dad, sister or grandparent you’re “oh well” is aimed at. We are the vulnerable and our lives matter too!

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Rare Disease Awareness Day 2020!

by Charlotte, posted in Blog posts

Today is rare diseases day, its estimated that 3.5 million people in the uk live with a rare disease. There’s estimated to be 7,000 different rare diseases. Most people won’t know is that I battle with a rare disease. I say battle because I’m not going to pretend the road has been easy. I have a multi-systematic condition, It means it affects most my body from my mobility and movement right down to my temperature control, digestion, blood pressure, heart rate, ability to speak and even at times my ability to breathe. It means I become very acutely unwell quite frequently. It took me over 5 years to be diagnosed… and its taken even longer to find anything that actually helps. There’s often no cure for rare diseases and like myself many rare diseases are primary or secondary to another condition. It’s meant that whilst others were in education, and beginning there’s lives.. I was living in the hospital trying to get some sort of control of a condition that no one knew anything about.

The reality of living with a rare disease is that on average you’ll be go undiagnosed for 5 years, see 5 different doctors and receive 3 misdiagnosis before being officially diagnosed with a rare disease. Often that there’s no approved treatment or cure for, so treatment comes down to management and is often a guessing game or Russian roulette of not knowing what effects it will have and most the time you find they do nothing or cause awful side effects or can even cause serious sometime life threatening complications. Despite all this you have to keep trying new things in the hope that maybe one of them will do something…There is no funding for research into rare diseases, Without research we can’t find cures. There’s little/no information on our conditions often there’s no results on google searches for it and most doctors and healthcare professional haven’t heard of it before nevermind having treated someone with it. Often in an emergency they turn to you and ask you what to do…like your the one with the medical knowledge. We have to document everything and become our own experts. We have to deal with medical professionals thinking that because they never learnt it in medical school then the disease mustn’t exist. We have to battle for a diagnosis then to see specialists and then for unapproved treatments and funding for those treatments and when like me we find something that works we then have to prove it does and battle for it to be funded so you can get it prescribed. Often we get multiple diagnosis’ or live with a syndrome without a name (SWANS). Every doctor we see has a different opinion of what they’re looking at, a different diagnosis and each have there own different treatment regime. Soon you have multiple diagnoses and multiple medications as long as your arm. Often people go years without a name for there condition.

It’s like going blind into a battle that no one knows anything about… we didn’t know what may lay ahead, we don’t know what medications to take or what not to give, we might not even know our own life expectancy or whether we will be here tomorrow. That’s the harsh reality of it. Rare diseases don’t just affected the person living with it either but it impacted on everyone else around them too, there parents, there siblings, friends and family and loved ones…

It’s taken more than 8 years of taking different medications and treatments to get flare ups of my condition, that have required paramedic support and hospitalisation every single day to happening only once a month. Something I never thought would ever be possible. It’s taken even longer to find a treatment and management that helps in some way.. not a cure, but helps make life manageable and years to prove it works and get it prescribed.It gives me hope that maybe even one day that these episodes will be so controlled that I won’t even have them anymore. That maybe even one day, I might find that treatment that will stop another person going through the hell that I’ve had to go through to find something that works.

It’s been a long road that many others have also had to go through and although it’s made me physically weaker it’s made me mentally stronger. It may affect so much of my life but what it doesn’t affect is my ability to raise awareness of rare diseases so we can finally get research done into these life changing conditions.. and more than anything it doesn’t affect my determination to kick this conditions rear end into oblivion. To find a treatment that works and eventually maybe with some luck, even find a cure. Alone we are rare, but together we are strong

#showyourstripes #raredisease #rarediseaseday

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Frontier V6 Wheelchair Magic Mobility ⭐⭐⭐⭐

by Charlotte, posted in Wheelchair Reviews
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We tried the frontier V6 wheelchair by magic mobility. On first impression this is a chair built like a tank, a brilliant option for those of us who live rural or who like to explore but haven’t got the funds to afford buying a whole seperate chair for off roading or the space. Its a mid wheel drive which gives it a much smaller turning radius than its sister the X8.
We took it out for a spin and it overcome so many obstacles and different terrains from grass and gravel to pot holes and mud it really took it on without any problems. It wasnt as smooth a ride as the X8 but it certainly still was a smooth ride and much easier to steer and turn on the spot. Although this would be a big everyday chair it does have the option to have smaller tires for indoor use that can be switched over when you need too, this is especially helpful for those of us who like to explore occassionally but would be using this chair inside more often than you would outside. We tried it inside and although it did look chunky and bulky it did manage inside quite well which was a real suprise. The seating options are the usual with tilt,power recline, leg elevation all options with there rehab seating. There’s even the option to have a folding back rest which would make transporting it in a vehicle easier. Its crash tested too so remaining in your chair in a vehicle won’t be a problem with the V6.
Again this chair came with a range of colours so the option to personalise it to you is there.

Pro
■Smaller than the x8
■Easier to turn than the x8 and much easier to steer
■Good off roading outdoor/indoor electric
■Hybrid wheel kit option Wheels can be swapped for indoor use and therefore a good large daily wheelchair.
■Has good seating options including power recline and tilt options rehab seating
■Folding backrest option

Cons
■It would be quite a large everyday wheelchair
■It’s expensive starting at £10,600 before powered seating options are added but it was definately worth the price tag. You can’t put a price on the freedom this chair gives you.

Conclusion
We really liked this wheelchair and the freedom it gives. It’s definately one for our adventurers out there and although there’s an option to have a spare set of indoor wheels however I’m not sure how often you’d do this as it won’t be an easier switch over so I can’t imagine changing them everytime you go inside. I personally loved this chair as I live on a farm however it’s not for everyone. Its a very good electric outdoor wheelchair though and would definately say to try it out and think about your lifestyle before you buy this one.
⭐⭐⭐⭐
Starting price £10,600

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Trying out the V6

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X8 All Terrain Wheelchair Magic mobility ⭐⭐⭐⭐

by Charlotte, posted in Wheelchair Reviews

⭐⭐⭐⭐

Two months ago I had the oppertunity to try the extreme x8 all terrain wheelchair.
This is an outdoors off roading wheelchair which can take on all terrain from gravel to sand to snow there is very little this chair couldn’t overcome.
On first view of the chair it was quite a smart but quite chunky chair as we’d expected from an outdoors offroading wheelchair.
We took it out on the farm yard to give it a spin. Baring in mind out farm is full of huge pot holes and uneven surfaces that makes going out in a usual everyday wheelchair pretty impossible.
The x8 has a top speed of 10km/h (6.2mph) which doesn’t sound much but whilst strapped into the x8 it felt like it was going a lot faster than that. I was pretty impressive. Its got low pressure knobbly tires which increase grip and climbability. And as someone who suffers from the effects of an unsmooth ride and vibrations in wheelchairs, i couldnt say enough positive things about the articulating front suspension on the X8 which made this an incredible smooth ride. I couldn’t even feel driving through the pot holes on the farm as it glided over them. A lot of electrics I’ve tried throw you forward and jolt you forward in the chair this is a problem as having poor core stability it makes it very hard to then not fall forwards in the chair… this didnt appear to be the case with the x8 it was a very smooth ride.
It had its flaws though this chair has 4 independent motors which is a massive pro for overcoming obstacles, it did however make it quite difficult to get the hang of driving it. Especially on turning around to come back on yourself the wheels would spin out and pull up much of the ground underneath you.
Once you’ve got the handle of learning the unique way of turning in the x8 it makes it a lot easier to get the handle of.
Another pro to this chair is the nice range of colours and specialist prints that can be added to the chair which gives the chair a bit of personality.
All in all this was a great all terrain electric wheelchair. Its definately one for those adventurers out there who want to go and explore and not be held back by the different terrains. The x8 can handle anything.



Pros
●Its an incredibly smooth ride even when driving over obstacles the suspension in this really does a great job.
●It will get you through any terrain
●Its got a good range of colours and three specilist prints and even custom colours can be selected.

● It’s crash tested so can be transported in cars whilst someone is sat in it.

● It comes with some good standard options

●It’s small for other all terrains out there on the market.


Cons

●Wheels do pick up a lot of mud

●It’s expensive starting at £12,400 (before powered seating options are selected). However reasonably priced in comparison to other all terrains out there on the market

●Very large turning radius

●It’s rather on the large size so will need a shed or dedicated space to be stored.

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Colour and pattern options for the X8 wheelchair. They also do a list of custom colours if you wanted something more personalised.


Conclusion
Perfect wheelchair for those who want to adventure into the outdoors and a good heavy duty all terrain electric chair that will make the sky the limit. Starting price £12,400

⭐⭐⭐⭐

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What a decade- Happy New Year!

by Charlotte, posted in Uncategorized

Its been lovely seeing everyone upload there achievements and what they’ve accomplished in the past decade… however its also been slightly sad seeing all the amazing achievement others have made around me whilst its felt like I’ve not made any. Then i remember that everyone else is on a different path to me. Whilst most 22 year olds out there are in education, getting there lives together and working… i know my reality and path isn’t that..
A decade ago i was in school and a ballet dancer, doing really well knowing exactly what i was doing and wanted to do with my life… a year later my health deteriorated and i became seriously unwell after a car accident since then I’ve spent most the past 9 living in hospital.
I was told that young people with disabilities aren’t worth the money spent to educate them. I then spent 2 years fighting to get home education not only in place for myself but for every other young person in the county where i lived at the time, to have education in the home if they weren’t able to access mainstream education even those post 16.

I was told to give up on education and that id never be able to achieve anything in life by my doctor and education services and despite being very sick on the day of my exams and sitting them… i achieved my GCSEs against all the odds. I did it.
Soon after I was told i wasn’t worth the cost of £24,000 for life changing treatment that could have cured my conditon or stop it progressing… i was left to deteriorate until the condition had spread so much that i was no longer eligible for treatment. I now cost the health care budget more than that alone a year.

I’ve gained more diagnoses this decade than i have limbs on my body… I’ve lost more loved ones than i have fingers on my hands.. and lost my dignity on so many occassions that I’ve lost count. Ive had complication after complication with internal organ involvement and airways compromises and infection on top of infection

Ive seen some of the worst corruption this past decade. Not long after coming back from our stay in great ormond street hospital, We then got an eviction notice served to us on the grounds ‘that your daughter is disabled’… we ended up in the high courts fighting this for years as i couldn’t be moved due to my health being so fragile and my health care we needed to stay near by…the corporate landlord that owned our property was so corrupt that they even wrote to social services and the nhs to ask them to help them by stopping my treatment and putting me into care as then they’d be able to evict the rest of my family if i was in care so whilst in courts fighting housing we found ourselves also fighting health and social care services who just wanted to place me in a nursing home at 16 and wash there hands of me. Local health authority were found to be negligent for things that they’d inflicted on me whilst in there care and for not providing the treatment I’d so badly needed… as a retaliation for us taking them to court to get my treatment and for me speaking out against the abuse I’d recieved in there hands, they stopped treating me even in a life threatening situation.

My health deteriorated very quickly and the people involved in causing harm continued to be involved in my care despite being found to have been at fault. I got progressively worse, We needed to move as a matter of urgency for better treatment that our county just wouldn’t give me and to secure a safe home over our heads.

We moved and since my life has only improved… my health my condition it still progresses and continues to deteriorate but at a much much slower pace. I’m finally getting my life back together, still unwell but living at home supported and not living in a hospital is a HUGE change and something I’d never imagined would be possible in a million years. I may still need help from emergency services atleast once a month but the difference between then and now is HUGE. I finally have a life! Sure its not the life i had 10 years ago i was a ballet dancer and at school loving life and its not the life most 22 year olds have… but its a life definately worth living. Its a life of nearly 10 reasonably good days a month and that might not seem a lot but to me these 10 days are the most precious thing to me. I’ve been to cinemas, out for meals, shopping… things i couldn’t even dream of beforehand whilst behind four walls. Those things may seem very small to others but to me these are huge achievements to finally be able to go out and see the world to feel the air on my face and breeze of air on my skin without becoming seriously unwell has been MASSIVE. Despite my journey being rocky I’ve met some incredible people along the way, people that have had a huge impact on my life and I’ll never forget and even got myself an amazing boyfriend who supports me through everything, who holds my holds my hand through the worst of days and is there for me for every new experience and milestone too. Its been a crazy decade its been a rollercoaster that I can’t believe I’ve overcome and survived through it. I’m so glad to be able to finally say goodbye 2019 and hello 2020 a new decade, and a new start. Happy new year everyone i hope this year and decade is the best for you all.. after all, its a wheelie good life.